Drug Wrecked: Where Does Change Come From?

Editorial Note: There are two elements to RxISK. One is identifying adverse events in order to keep people safe and to widen our knowledge about what drugs do.

But just as important is taking on a power structure that some of us get a glimpse of when we raise the possibility of an adverse event and our doctors dismiss us, or get nasty, and close ranks. The idea behind a RxISK report is to give someone a piece of paper to ever so slightly get to grips with the power imbalance and make it ever so slightly easier to raise the possibility of an adverse event.

The Reaction people get from doctors opens up another use of a RxISK report – mapping doctors who listen. If you have a doctor who responds favorably to a RxISK report could you send the details to David.Healy@RxISK.org.

The exchange below comes from comments on a recent post The Pills that Steal Sex. There are many other excellent comments but these three bring out the isolation of someone who is Drug Wrecked.

Spruce

These are some of the things I have been told over the last 8-9 years by doctors when I have told them I was convinced citalopram had caused my ongoing sexual problems.

Doctor. I am telling you it is not the medication that has caused this. Me – How do you know this? Doctor -. Because i am a doctor.

Doctor. Your libido will come back when you decide it will come back.

Doctor. You have been getting stuff off the internet from people who aren’t doctors. You can convince yourself you are suffering from all kinds of things by looking up things on the internet.

Doctor. I think this is mostly likely related to your OCD. (I have fairly mild OCD, but OCD never made my genitals go numb, or orgasms be pleasureless, or have no sex drive).

Doctor. We know antidepressants can occasionally cause sexual problems, but once the drug has left your system, any side effects are reversed

Doctor. I know you get anxious, I think this is most likely related to anxiety

Doctor. I think you should think of something else, I think you are fixating on this. (The only reason I keep thinking about it is that it hasn’t gone away).

Doctor. I notice you have spoken to some of the other doctors here about this. I think you shouldn’t keep bringing it up.

Psychiatrist in writing: We acknowledge that you feel you are suffering from Post SSRI sexual dysfunction but Post SSRI sexual dysfunction isn’t acknowledged by medicine as a real condition, and therefore we cannot comment on whether you may be suffering from it.

These are genuine responses from different GP’s, and one psychiatrist over the last eight years. It is almost impossible to get doctors to believe this condition exists, and once you have been labelled as having a mental illness (like most people who take SSRI’s have) anything you say is viewed through the lens of mental illness. The medication is never at fault. It is you that is the problem. No one will listen

Heather:

Spruce this is EXACTLY how it happens. I think all these comments plus any contributed by other PSSD sufferers should be collated and made into a book, to be taken into every medical consultation about this.

If it wasn’t so ghastly, it would make a good comedy sketch for the Two Ronnies. I think the ‘best’ one is your final one and it’s one I’ve had, admittedly when akathisic from steroids, almost unable to get my diaphragm in my chest to allow me to breathe, pains down arms like heart attack symptoms, eyes so swollen could hardly open them, and shaking uncontrollably, GP ‘ well, I know in your mind you THINK you are having a problem with the medicine but it’s all in your mind and what you need is a psychiatrist, so I’m not discussing it with you. You can’t be allergic to steroids, steroids couldn’t do this, we use them to TREAT allergies.’ End.

Patient dismissed, feeling confused and desperate and at that time would have been grateful to die, as felt like was going to anyway. The worst bit was, he’s an expert, I am supposed to trust in his knowledge, he must be right, I must be wrong, so …..I must be crazy. God help me, I’m done for.

That was, for me, one episode and took a year to right itself. You folk are suffering for years on years. It is beyond words. Totally unacceptable. I am so so sorry. We have to change this, as a community. But how?

Spruce

Every day for the last eight years I have woken up to this nightmare of numb genitals and all the other sexual problems. It is like waking up into a horror film every single day. The amount of mental torment over the years I have had from this PSSD easily surpasses all the other problems I have had in life even if you added them up collectively. Someone should be doing a long prison sentence for what happened to me; but no, the people responsible have gotten rich at my great personal expense. The injustice of it makes me want to vomit. I can never ever forgive what happened.

If I went out and got in a fight and injured someone somehow and it resulted in brain damage which meant they couldn’t feel their genitals or have any sexual feelings i would get a prison sentence. It’s one rule for the rich and powerful and another for the common man. I still can’t get my head around how this has been allowed to happen to me. Even if I was to recover tomorrow I still feel I would be psychologically permanently damaged from what has happened to me, and all the years lost etc. Almost on a weekly basis I question the point in continuing.

When I tried to complain about the PSSD and the fact that a psychiatrist took me off benzodiazepines much more quickly than is suggested by the BNF or the NICE guidelines I soon found out how doctors protect each other and hide behind their legal teams. I was the problem for daring to complain.

They would answer my complaint with questions not even relevant to the complaint and try to stall the complaint process by repeatedly referring to my sexual problems happening when I was on the drug and deliberately not mentioning the post aspect, even though I specifically asked them to address the post aspect. They would also deliberately ignore some aspects of the complaint, and my SEAP complaints advocate would often have to prompt them many times before they would address them.

I took my complaint all the way to the Parliamentary Health Service Ombudsman (PHSO) but found out that they were worse than the mental health trust. I had actual evidence that the trust hadn’t followed the correct guidelines regarding benzodiazepine withdrawal, and I could categorically prove two people in my complaint had lied, but the ombudsman told me even if they had lied it was unlikely to change their overall outcome and in their final written response they said the trust had done nothing wrong, even though there was overwhelming evidence to the contrary.

The PHSO has been heavily criticized by the patients association for not being fit for purpose and ignoring evidence presented to them and being heavily biased in favor of the NHS. They come down in favor of the NHS in 96% of cases, so statistically you have a 4% chance of getting some form of justice and even then they usually just ask the trust to apologize, regardless of what damage has been done to you. One woman was offered sixty pounds in compensation by the PHSO, after the NHS accidentally killed her husband.

Also the MHRA (drug regulator) is a sham. It is run by ex-drug company employees, and quite a few people who work at the MHRA have shares in the drug companies. When I reported my PSSD to the MHRA, the person who I reported it to was sniggering with his colleague about my sexual problems. That still makes me angry to this day.

When I pushed the MHRA about what they are doing about PSSD, they said there was insufficient evidence to prove it exists, even though they have had a lot of people reporting it. I have this in writing from the MHRA. As far as I am concerned the MHRA are almost as much of a problem as the drug companies in regards to trying to cover PSSD up.

I feel completely betrayed and failed by society. Doctors and the drug companies are very well protected by the system, and they know this. Probably why they can afford to be so arrogant.

Comments

The change has to come from:
Starting all the way up the top
to
right down the bottom of the hierarchy.
Looking at Western Medicine, one would assume that it begins with the Law, MHRA and end with professionals.
There are many tentacles that are at stake here.
It is like hand in a glove. They all work together.
Once a complaint is registered, it must be documented and placed as a warning on the medicine, concerned.
Too many ghost writers, bribery and corruption are at play, here.
If patients like Heather and Spruce are taken seriously and not ignored, changes could take place right from up the top.
If the top is not working, professionals should speak up and spread the word. This is the only way!
David Healy, suggested bringing in a risk report with you.
Some professionals may be intimidated by this! ~ I don’t know?

Change could be achieved, if they really wanted to stop bad things from happening to people.
Playing Russian roulette with peoples lives should not be a game of chance.
If there are patterns going back from thirty years ago, surely, professionals would stop prescribing.
If they see something is not right, spread the word.
It begins with those who we trust our lives with, if the necessary gatekeepers are turning a blind eye.

On joining the new surgery I had put on the request for any previous medical history Abrupt Discontinuation Symptoms from Seroxat.

I told him the whole nine yards and he suggested I complain to NHS Highland as he was of the mind that a Psychiatrist who ignores an emergency admittance to a mental hospital, does not check on medication which he had prescribed and written warning letters to the surgery about, was given Diazepam for cold turkey Paroxetine and released with suicidal ideation was something I should take further – with the proviso that don’t tell anyone I said so!

a power structure that some of us get a glimpse of when we raise the possibility of an adverse event and our doctors dismiss us, or get nasty, and close ranks.

SPRUCE

I’m with you here, re the PHSO.

I also took my complaint to the SPSO (Scottish Version) and I have their letter dated 3 December 2009.

I won’t publish the whole page and a half as it contains too many references to ‘doctors’ and ‘medical practises’ but to give you the picture, these are a few of their responses:

Dear …..

I refer to your complaint with this office about…I have read through the correspondence that you sent to me and would now offer the following.

The role of the Ombudsman’s office is to investigate complaints about those organisations providing public services in Scotland. Our office was set up by the Scottish Public Services Ombudsman Act 2002. This says we cannot normally investigate complaints until they have been through the whole complaints process of the authority complained about, unless it is not reasonable to expect this to have happened.

I have contacted the Medical Practice and they have advised that you have not submitted a complaint to them in line with the NHS complaints procedure. However, I feel I must make you aware that even if you did complete the complaints procedure with the Medical Practice, there are other factors about your complaint which raise issues of eligibility for us.

The SPSO Act allows us to look at many things but it also places certain legal restrictions on our authority. In particular, the Act says that we must not look at any complaint where the matter complained about happened, and you were aware of it, more than a year ago, unless we are sure there are special circumstances which would prompt us to take the complaint.

From the information provided, it appears that your complaint stems from treatment provided to you in 2002/2003. This is at least six years ago and this is well outwith our 12 month time limit set by the Act. So, even if you completed the complaints procedure and returned to our office, we may be unable to pursue your complaint given the passage of time.

If you wish to pursue your complaint with the Medical Practice raising your concerns then you should do so now by submitting a letter clearly marked ‘Formal Complaint’. You should outline clearly what your concerns are, why you are unhappy and what you would like the Medical Practice to do as a result of you making a complaint. You should note that you can only raise your concerns via the complaints procedure and the Medical Practice will be unable to deal with any references you make to the Seroxat manufacturers.

I have closed the file on your complaint and, in accordance with our procedure, notified the medical practice by sending them a copy of this letter.

I hope you find this information helpful …

Gateway Officer

The Practise Manageress interviewed the ‘doctor’ who immediately picked up the telephone and called the Doctor and Dental Union of Scotland who told her a ‘Patient’ cannot complain after one year.

The ‘doctor’s’ boss called me from his Private Practice in Canada to tell me he was too busy to read my ‘Formal Complaint’ despite us having corresponded, by email, many, many times on the subject.

I received a response from the MHRA, in a similar vein, to that above from SPSO.

Lengthy, and, describing the functions of the MHRA and not what they could do to help me.

So, yes, Spruce, I feel your immense frustration, that we end up, despite a huge effort on our part, with no validation or ‘feeling’ that they have any intention of helping us out.

Even more so, when we have had to talk about intensely serious events, which is soul destroying in itself..putting ourselves out there, hoping that just ‘one person’ would appreciate not only how difficult it is to explain it all to a complete stranger but how difficult it is to get any sort of humane response from the ‘doctors’ who put us there..

Subsequently, my ‘legal aid’ funded legal case had no qualms about nonsensical 12 month caps; it was the legal GP, who got paid a fat fee, who ruined my case .. with the complete denial that the SSRI was in any way capable of inducing that which I had explained ..

It is much the same here in the USA. I first tried to sue my doctor, a polypharmacy case, and was told I had a very good case. Problem was that due to TORT reform we were limited to a $250,000 settlement at the most – in other words not worth the lawyers time. No lawyer would take my case unless I had the money to pay them first.
So next I went to the state Medical Board and filed a complaint. Had all the evidence , even in the doctors own handwriting on his patient records. They said ” not enough clear evidence”.
Clear evidence? It could not be more clear. I appealed with the same result. I finally got the message that nothing would be done. Not even validation for the harmed.
Educating the public I think is our best hope. If enough people know and stop buying the products then perhaps they will listen.

“You should also respond constructively to concerns raised by colleagues, PATIENTS, and carers about your own (prescribing) practice”. (My emphasis).
————————
Medico-Legal Professional Advice for Doctors:
YOUR PRESCRIBING DUTIES.

“You have a duty to understand the drug you are prescribing, including any adverse side effects, contraindications and appropriate monitoring”
————————
The immediate dismissal and rejection of accurate and vital patient reports of predictable and well documented SSRI destruction of sexuality is embarrassing, humiliating and profoundly distressing to read after forty years of medical practice.
More scorn cast upon the duties of a doctor than adherence to the basic tenets of safe and patient centred, compassionate care.

The documentation above appears to portray responses steeped in denial, ignorance and arrogance.

Such prescriber rejection further wounds and destroys self esteem.
It augments stigma and demonstrates a naive trust and belief in the distorted safety propaganda disseminated to prescribers by their drug representatives and a system of CME largely under the command and control of corporate interests.

Well, Tim, you’ve certainly caught them out haven’t you! How typical of those who think that their superiority blinds the rest of us to their ridiculous half-baked half-truths! Do they REALLY expect us to believe that there is something about sex offenders which causes an SSRI to work in a different way for them? The whole situation treats the rest of mankind (MAN as in human there!) as fools. We know that painkillers, meant to relieve pain, can actually cause more pain if over-used – that’s one thing. To suggest that a SSRI can create the equivalent of PSSD in cases where that would, possibly, suit the public ear and, yet, deny that possibility in general use, is so ridiculous – were it not such a serious condition, it would be laughable! How can these academics, who find denial so attractive, so readily gain our trust? What is it that keeps their status above questioning in the eyes of so many? It is easy to blame the pharma companies – and there is plenty TO blame there of course – but the problem has to be far wider than that. Could it be that the general public steer well clear of any matter which could see them as edging towards the ‘1 in 4’? If that could be it, then the fact that the young Royals have now spoken out so strongly about it being ‘time to talk’ could make a difference, I think. Unfortunately, with it will probably come the attitude of ‘it’s ok for them, they can afford the best support – that level of care is not afforded to the rest of us’ which will dampen any conversation. Whatever, on we must go – supporting each other, in the hope that our example may open the minds of the yet unquestioning public, eventually bringing them to the realisation that there is a lot in psychiatry which needs unpicking to get to the truth about every human condition and how they affect each unique human being.

Well, I certainly found the professorial denial of PSSD pretty questionable Mary.

Perhaps this and other “experts” in mood disorders –
(who deny the most devastating, common ADRs of SSRIs) – do not read the publications and press releases from a professorial psychiatry colleague who advocates SSRI use in his role of inducing voluntary chemical castration?
Hard to believe perhaps.

Here is another GMC directive.
(Perhaps this may be optimistic when considering the ADRs of psychotropic drugs?)

G.M.C. PRESCRIBING GUIDELINES: RAISING CONCERNS.

“PRESCRIBING AND ADMINISTRATIVE ERRORS BY DOCTORS ARE COMMON BUT

HARM IS USUALLY AVOIDED BY PROFESSIONAL COLLEAGUES INTERVENING BEFORE THE ERRORS CAN AFFECT PATIENTS”.

Excellent post the above Tim and an excellent thread. Been through it all and off course got no real justice. Prescribing errors are indeed common. My own case was exactly the above and what caused the harm(amongst other issues) was that other professionals that were involved in the case, a psychiatrist, a clinical psychologist and the village pharmacist(who was making plenty of money out of me being on venlafaxine when he should have stopped prescription on grounds of inappropriate, it’s not cheap stuff like Prozac, follow the money and get the answers) should have intervened to stop the GPs mismanagement and didn’t. Couldn’t pursue psychiatrist for negligence as he disappeared back to South Africa shortly after seeing him. According Lawyer he was under a legal obligation to stop the GP and instead completely hoodwinked me with to regard to how bad the GPs mismanagement of ‘work related stress’ was and claim against GP was only worth £5K on account of psychiatrists actions which were also negligent. Ombudsman Service investigation did admit that both the GPs referral to the Clinicall Psychologist and Psychiatrist were inappropriate and called into question the GPs competence in such areas. The referrals are absolute beauties, clearly written by someone who didn’t understand that the issues in my life at the time. A 21 yr old Mental Health Support worker earning £15K/year and having completed the SVQ in social care could have written a better referral letter(s). Mind you they would have probably understood that the issues was work related stress and that the solution was have a good holiday and get a different job. This was my solution, got my dream job then lost it cause venlafaxine turned nasty on myself and turned me into non functional zombie-dismisses by GP as ‘depression no longer responding to treatment’ This GP is only GP who ever thought I had an issue with depression in the first instance. He did note in my notes that I was of opinion that I was not depressed and didn’t need medication. The answer I got from Senior Partner to this question that I asked in my formal complaints ‘Why did GP ignore me telling him that I was depressed and could deal with issue without SSRI’s? was as follows; are you ready for it? ‘If you didn’t think you were depressed and could deal with things without medication then you shouldn’t have taken it’ Nothing like taking no responsibility for one’s actions eh! Blame the patient for the Doctors actions. Excellent thread this one, and for all those out there harmed needlessly, Keep Well and keep trying to make the most of your life in spite of the injustice against you

Thank you for your feedback, and for the powerful insight into your experience of trying to allow ill-advised, “pharma-deceived” prescribers of SSRIs the opportunity to both learn about their ADRs, and hence to avoid harm in others.

Even though your adversity and experience of
patient- blaming comes as no surprise, it is still painful to read.
In our General Professional Training in the 1970s, we were taught and taught again to listen to our patients, their loved ones where appropriate, and learned so much medicine from this ever growing and invaluable lifetime experience.

Perhaps a further quotation from Sir William Osler might replace the words for which I am lost here, (tailor-made for prescription psychotropic drugs perhaps?) :
“The greater the ignorance – the greater the dogmatism”.

I can’t speak for Spruce, but my own impression that stays with me, following my extraordinary treatment by the GP (whose Practice I’m glad to say we moved from shortly after this), is that some doctors make value judgments and maybe their power goes to their heads. We need to remember that they are just people, like anyone else. They can be jealous, jaded, prejudiced, and sometimes if you appear intelligent but maybe politely question something they say, they feel peeved or even threatened. Also, if you present them with a problem and in their gut they know it’s virtually unsolvable, maybe you are a thorn in their side and they want to get rid of you. What I’m saying is, they are not gods and should not be treated as such. They are partners in our quest for individual good health, so, like Tim says ‘listen to the patient, he is telling you the diagnosis’.

I had only quite recently moved to that GP surgery because we’d moved house. Prior to that, we’d been with a fine team of doctors a few miles away, but sadly now we were out of their catchment area. In an attempt to justify myself as a reasonable person, ie that ‘honestly, the steroids REALLY have made me feel ill’, I defended myself by saying that I was not a difficult patient and my previous doctor, with whom I’d been registered for many years, and who I’d consider a good friend, would vouch for my good sense, like a reference. This really enfuriated the steroid GP, he went off like a rocket! I just felt that my face didn’t fit, nothing I could do or say would appeal to his better nature (if he had one, and I expect he did, for those who treated him with adulation) so it was better to find a way to get better without him.

So I took private advice from a hospital Consultant who treated with Complimentary medicine. She advised using careful diet, B vitamins for the raging thrush in my mouth, and just riding it out. It took a year till I could watch TV again and concentrate to read without racing heart and roaring anxiety. She had no doubt that prednisolone (steroid) could have caused my symptoms. I had to keep working as best I could, but it was SO difficult. Some of the time I was endlessly pacing the room, with a feeling like a tidal wave of shuddering shaking overwhelming me continually. I’m afraid I’d long since realised the GP was useless, in fact, worse than useless, he’d been terrifying, foul tempered, and abusive. I moved to a Practice in another adjacent county, and on the whole, the treatment has been good, although I avoid consulting a doctor unless I am really very concerned.

I tread very gently at all times. I make sure I am well informed. I am lucky enough not to need any medicines. But I could find myself in Spruce and others’ situation at any time, so I’m not complacent. I dread getting ill, as do so many folk now. It’s very sad that the medical profession, once so revered and respected, are often now feared and despised. I’m afraid they’ve brought it on themselves, but the pressure some of them work under, can’t be helping. It costs nothing to be mutually respectful however, and like Carla says, it pays dividends all round.

I guess you might have had more impact than anyone David when you said to the court (and jury) in the Dolin case that you could guarantee if everyone present took a small dose of seroxat, within 5 minutes they would all be experiencing genital numbness…

Wow. Beautiful. Have been following proceedings eagerly and am rather late in saying what a result. Brilliant – although it doesn’t bring Mr Dolin or all the others back. Nonetheless, RESULT!

Why silence consumers who have been horrifically impacted by medicines?
The information is already out there for all to see.
What was hidden from our eyes is all out there for all to see.
If one has not experienced anything deleterious, many believe what big pharma proclaim?
When you experience an unpleasant outcome, this is when the awakening takes place.
An experience can not be open to misinterpretation or based on the assumption that it is all a state of mind! This deliberately prevents experiences from being acknowledged. It is this negative mentality that has to stop! The false labels, lies, cover up’s and corruption are the very poor reasons why things don’t change..
Many negative experiences, strikingly have similar outcomes.
Those who speak up, have nothing to fear.
For those who do wrong, they have everything to fear because when the masses awaken and gather, big pharma and many others have a lot of explaining to do!

“Olanzapine Withdrawal: Sally’s Story. … I had a couple of goes coming off too quickly, and suffered horrific withdrawal symptoms; headache, agitation, anxiety, insomnia, nausea and vomiting, and feeling appallingly ill. I am vomit phobic, so the sickness drove me back on to the drug, and the symptoms went away.” https://rxisk.org/olanzapine-withdrawal-sallys-story/

I lived the Zyprexa/Olanzapine withdrawal nighmare too. Not typing it all out right now and getting angry that they still get away with it. I should add they gave me that poison because of Xanax Remeron withdrawal then when I got the Zyprexa withdrawal sickness getting off that rob your ability to feel pleasure from anything zombie poison those withdrawals forced me back on benzos that are at least somewhat pleasant to take till tolerance gets larger then your prescription and that whole nightmare.

­
“Beyond this, it should not be surprising that giving a poison for years should lead to problems. Is this prejudicial to say? There is no other time we pump our bodies as full of chemicals as when we take pills. The art of medicine lies in using poisons to bring about good but we should not be surprised when poisons poison, and doctors are going to commit professional suicide if they don’t alert patients to this risk. Having poisoned someone its also professional and scientific suicide not to work with them in order to map out just what has happened and learn as much as can be learnt.
DH

PSSD needs to be acknowledged by medicine as a real condition that is caused by SSRI’s, like tardive dyskinesia and type 2 diabetes was finally acknowledged to be caused by antipsychotics. Until this happens the drug companies, doctors, and the establishment will hide behind their argument that it isn’t acknowledged by medicine, and therefore they can continue to ignore it, and claim it isn’t real.

Once it is acknowledged as real, it will be easier for research to be done and doctors wont be able to dismiss it, and they will be able to feel more comfortable talking about it. Also the misery, loneliness, and isolation caused by being told for years “that its all in your head” and that what is happening to you isn’t happening, will hopefully come to an end.

I certainly know from my experience with PSSD that being told for years that PSSD isn’t real is almost as bad as living with the condition.

I am hoping PSSD will eventually get the official recognition it deserves, and sufferers can get the validation they need. There is certainly a lot more stuff online about PSSD today compared to when i first realised i was suffering from it in 2008.

I would like to see an official support line offering emotional support and advice on how to cope with PSSD, and what to expect in regards to recovery etc. Like there are support lines and organisations like battle against tranquilizers for people withdrawing from benzodiazepines etc.

Its just getting the establishment to acknowledge officially that it is real. Once that happens, a lot more options should become available for people suffering PSSD, including the possibility of litigation. Of course this is part of the reason the drug companies dont want PSSD to be acknowledged.

I hope Rxisk and Dr Healy can help in bringing about official acknowledgement for PSSD.

I found the Horizon programme regarding ADHD rather artificial to be honest. Rory’s actions seemed to me to be rather contrived – as if he’d been given a list of possible ADHD pointers and he reacted to illustrate as many of these as possible. The programme also showed a clip of life with a young autistic child. Here was a child, obviously out of control and lacking in self-discipline, searching for attention – and finding it in displays of poor behaviour. We saw crayon/felt pen marks on walls, a lock on his sister’s bedroom door so he could not enter to cause mayhem and other examples where he was treated as the enemy within his own family. NOTHING was shown, or indicated, as ways of supporting this child. A child with ADHD or any other aspect of behaviour problems needs far more guidance than a child who easily complies to rules. Locking a door is nonsensical – teaching him to RESPECT the property of others leads him to a better understanding of social interaction. Hard work? – yes. In need of drugs? – possibly, but ONLY to support him whilst he learns the acceptable way of interacting with others. A life on Ritalin? – NEVER! As for Rory’s possible ADHD – what difference would a diagnosis make to his life? Possibly answer a lot of questions about why he finds normal, everyday life so difficult (if that is so) and a realisation that he’s made it despite having a more difficult journey than most.

Well, I guess in the end it’s about understanding. Mary is right that a child who has issues with behaviour needs a lot of careful understanding and patience. But what do you do when a child cannot seem to respond to reason, who has no respect whatever for any kind of authority, who drives teachers and parents to distraction. A child who can switch on charm, can seem to accept a plan for good behaviour but disregards it the day afterwards, who lies constantly, and who has seemingly no sense of loyalty to those who love and care for him. Who betrays friends constantly. Who, by the time he gets married, does not have one single friend from his life that he can ask to be his Best Man and has to have his wife’s cousin instead. Is this ADHD or is it something else? Where it seems impossible to establish any kind of empathic relationship with your child, despite literally years of love and patience and kindness, I’m wondering what the answer is. Not Ritalin certainly, but could it be some kind of birth induced brain problem? I don’t think any child would WANT to behave like this, to drive away their school friends, to see their parents constantly exhausted. If these children are unable to feel calm peaceful concentration, and experience the satisfaction that brings, could they almost be suffering a mild form of AKATHISIA from a racing mind, but be unable to explain how they feel? It must be very difficult for them, and because their behaviour is disruptive, they are always in trouble and so they may feel this is their norm, and play up to it. I don’t think this applies to Rory Bremner really. I don’t think this is autism or naughtiness either. I think it’s an inability to ‘feel’ the same way that most folk do. And no drugs are going to change that.

Heather – you know that this will just be a layman’s reply but, to me, it sounds more in the area of ‘brain injury’ than ADHD etc. It’s a sad state of affairs whatever the cause – I would just like to know, out of interest, how the schools classified the problems. It is a known fact that concentrating purely on the ‘goodness’ displayed by a child with these sort of difficulties and completely ignoring the ‘naughtiness’ works wonders. It’s REALLY hard to do, for a teacher or other pupils, but the results can be quite astounding. The whole school ethos has to be ‘inclusive’ in a really tightly structured manner so that the expectations remain from one class to the next – and that is difficult to achieve in any mainstream school.

At the risk of upsetting contributors to this Blog, I have to say I enjoyed Rory Bremner’s BBC1 programme last week about ADHD, which Annie has spotlighted here. I saw the brain scans of people with diagnosed ADHD (including Bremner’s) and it was clear that one side of those brains were not firing like those of most of us. All these things are not set in stone of course, but anyone who has lived with a child who manifests continuously the sort of exhausting behaviour that is commonly described as ADHD, it’s comforting to believe that their behaviour is not naughtiness, but something deeper. According to the programme, babies born too early and suffering traumatic births, can suffer a certain kind of brain change. This can be shown in brain scans. (In the same way that brain scans can show how RoAccutane-isotretinoin can affect the pre-frontal lobes so that 21% of their functioning is compromised).

We were shown that the impetuosity of ADHD-type people is actually valuable. We were shown that the way they look at life is very helpful to us. All part of the rich tapestry of what makes the mix of all our differences so special. For me, as a parent who could never fathom why I could never deeply engage with my older son, who wanted constant attention and despite endless reasoning about realising the consequences of his actions, never seemed able to accept and act on it, I suddenly feel released from niggling worry. I feel I understand him at last. His behaviour is probably never going to change but at least I feel now that this was not my fault. He was born too early, he did have a traumatic birth, and he has found his own way through, even if part of that was by rejecting his parents. He never had any medication and I’m really glad about that. I hope he is. We see Rory Bremner taking some meds and being quite iffy about their effect. The next episode in this ADHD research series this week should be interesting.

Anything but ‘their harmless drugs’ when your seeing a urologist in the waiting room surrounded by 90 year old men propped up by their walking sticks.

Doctors have moaned about me exactly how you describe Spruce for the last 6 years (so I do not see them anymore, being raped sexually raped every second of every day is hard enough without the 2nd rapes). I guess the bullying has worked into stop bothering to see them even when my life has been really in danger (tried to heal myself and all sorts). Hell I walked around with the most crazy harm without seeing a doctor. If i just died and went away it would make it so much easier for them because I was just annoying them with the rape of my life away with their ‘harmless’ mass psychopathic drug dealing.

I laugh all the time out of traumatized hysteria, I mean they were really nice doctors when I was small with giant tasty bright glow in the dark orange ‘medicines’ liquids laced with sugar to fix the cartoon weekly video indoctrination of how my brain is lacking this magic glaxosmithkline liquid.

So for the last six years PSSD is met with glaxo and pfizers “psychiatric drugs have no permanent harms after 3 months” silly. it’s always a ‘magic’ 3 months no matter what hospital or doctors clinic I wasted my time showing up in. I asked is that what the NHS is teaching you, he said no but… who knows. Why so many say a magic 3 months. Why not 4?

Alcohol on the other hand, of course that has permanent harms… it wouldn’t if it was prescription.

The situation is so so funny, I am so sorry I am inconveniencing these psychopaths with ever mentioning my dick in some other mans captivity at my expense. What idiot gives this drugs to children.

What a living nightmare every second. I just want to wake up. The jokes over.

Change can only occur when the professionals concerned are upfront and honest.
Coming from a place of authenticity and integrity, allows the person who has been mistreated, to move forward.
When you are dealing with people, day in day out, we all have a responsibility to treat others the way we would like to be treated.
When a patient has been damaged by a medicine(s), it needs to be acknowledged and validated.
You can never judge what cross some of your patients have to endure because of some professionals lack of understanding.
Sweeping things under the carpet or being in denial of what has happened, does not crate an environment which is beneficial for all concerned.
In order to learn from lessons and in order for circumstances to improve, honesty, in my opinion is what we all depend on so that favourable outcomes can be achieved for all concerned.
Some professionals,, have to take the ‘ego’ out of the equation and have to understand from the patients perspective, how it feels to be denied the basic human rights, after a tragedy has occurred.
If compassion and a change in culture takes place, professionals are not afraid to come forward and apologise to their patients.
If damage has occurred to the patient and it is permanent, the professional(s) concerned have to understand that the patient is not to blame.
If anything, the professionals concerned should demonstrate a level of empathy, maturity and compassion because that patients life has been altered dramatically.
If a patient passes away because of a medicine, honesty somehow does not lessen the blow however, it does not place the blame on the patient or loved ones.
Pharmaceutical companies, practitioners, pathologists etc……..If there was an element of honesty, there would not need to be walls or barriers created.
When integrity is nurtured, the necessary changes slowly begin to diffuse into the consciousness of the healer(s) and those who entrust their lives in their hands..
Researchers, university/college lecturers/professors and the introduction of patients being part of the educational institutions, by talking to medical students about how medicines have impacted them, can certainly be part of the teaching process. If we learn from past mistakes, we can somehow all be part of a change.
Law can also benefit from being honest. I would love to see lady justice hold the scales , balanced evenly, for once and for all!

Thanks Annie, very useful bit of research. Today a bit of Olly’s story is in The Times, having been asked for by Kat Lay, their Health Correspondent. We were asked our reaction to the rise in prescriptions for RoAccutane- isotretinoin, ( as it turns out, she states in her article, 560% ). We said ‘terrifying’. Hers was fair unbiased reporting, I think Olly would approve. Have always tried to keep his story well clear of Press reports till now but felt so desperately sorry for Luke’s parents, trying, just like us nearly 5 years ago to rattle cages and get the world to listen.

Big Pharma rules the world. Even after the Case Report sited for Olly, ROCHE line up out their chestnut of Megan Taylor who was a MODEL, (my capitals) whose friend the ACTRESS recommended RoAccutane and it saved Megan’s career….seductive words, ‘actress’ and ‘model’….it just sounds like poor Olly was unlucky. Well, he and thousands and thousands of unseen unheard of others. Kat Lay brilliantly got our point across – whilst this (lethal, Russian roulette drug is pushed onto everyone with acne, NO OTHER RESEARCH FOR A SAFE, AFFORDABLE AND EFFECTIVE DRUG FOR ACNE IS BEING DONE.). No one is arguing that acne is not dreadful to live with, far from it. But to heap on top of that the fear that the treatment offered may actually KILL you, (after years of tortuous psychological struggling and being branded as ‘mentally ill’) is absolutely UNACCEPTABLE. Watch out folks, now ROCHE will probably really start trying to discredit us in the media, as we’ve let our heads be seen above the parapet; of course we are not a David Healy, we are tiny fry next to he, but we are still a pesky nuisance. May I say here and now, before witnesses, that my husband David and I will never take our own lives, we have much work still to do,most if anything should happen to us, please ring alarm bells everywhere….

Further response to what Annie has alerted us to in The Times, regarding Readers’ Letters in answer to Ed Vaisey MP’s article…
First, it should be said that Ed Vaisey is the MP of young Jack Bowlby, who died aged only 16, no previous mental illness himself or in his family. He was one of the team of MPs who supported our group of parents when we had a Westminster Hall Debate about the safety of this drug in 2013. I guess Ed will have been prompted to comment, having seen the Times’ article by Lucy Bannerman reporting the death of Luke Reeves and the opening of his Inquest.
The Readers’ Letters in many cases detail the horror of severe acne, and how RoAccutane cleared their skin and restored their confidence, and no one could doubt their sincerity and the sense in what they write. One says his acne covered every inch of skin and he slept in a pool of blood at night. Our son’s back and chest were like this. No wonder that person and our son took the drug.

My point, however, is this. If in order to ‘get your confident life back’ ie drive away the horrendous acne lesions, you have to actually RISK your life, then what kind of cruel choice is that, and how can we inflict this on anyone, already suffering. Yes, ROCHE of course they feel suicidal at times about their appearance, but they retain their REASON and ability to weigh things up rationally, search for treatments and go on living. If you are one of the unlucky many who have taken RoAccutane and have been permanently damaged by it or even are now dead, you won’t be writing glowing approval of it on The Times’ Readers’ pages.

The answer, as we have stressed over and over and OVER again, is to get good research done in our Universities Science departments about:
a) what really causes acne in its various forms for different people, and
b) to offer a new, SAFE effective affordable treatment available for all, so that acne can be banished for good.

But we have a Catch22 situation. The Universities’ research departments are often funded by Big Pharma, particularly by ROCHE, and none of them ( certainly none we’ve approached ) want to get on board. Maybe they’d love to, but they can’t. So RoAccutane remains centre stage in the armoury offered by grateful dermatologists, and as the MHRA told all we parents in a meeting in Portcullis House with Ed Vaisey and others in 2013, it’s very sad about our dead children but they are collateral for all the others whose acne improves. 1 in 10,000 they feel, will die. But we are pretty sure the figure is far higher. And as DH has often pointed out – look at the number of prescriptions and work the figures back. That is one hell of a lot of needless deaths, surely. Nearly 49,000 prescriptions a year currently and rising at the rate of 560% since 2006. Being dished out like sweeties, according to Millie Kleive in The Times yesterday.

It can’t be allowed to go on. We need tests for CYP450 enzyme routinely right now whilst RoAccutane is being offered (which just might help a little) and we need URGENT action from all sides of Government to facilitate a new SAFE treatment as fast as possible, with no interference from ROCHE.

Carla of course you are right about the need for doctors and health agencies to be open and honest when medicines cause damage to a patient. Unfortunately things really don’t work that way at the moment.

In fact the doctors and health agency’s can get a lot nastier than you might think if you keep pushing to get answers after being damaged by a drug.

I found this out after making a complaint to Avon and Wiltshire Partnership, after developing PSSD, and being taken off benzodiazepines too quickly, which ended up in me having a seizure, auditory hallucinations, and a whole strew of other nasty symptoms which took years to completely go away. The psychiatrist had also prescribed two drugs which were contraindicated, and were dangerous to prescribe together, and i was able to prove this. The PHSO ended up claiming that because the psychiatrist didn’t have regular access to a pharmacist, that it was an easy mistake to make (in regards to the drug interaction), and they weren’t going to do anything about it (they didn’t even ask him to apologize even though the co prescribing made me very ill for a number of days).

My complaint ended up spanning a period of about 6 years.

I originally didn’t start out wanting to complain, and at first just went a long to my psychiatrist hoping he would see reason that my ongoing sexual problems were caused by citalopram. It was very obvious to me that they had been caused by citalopram, even though i had been off the drug for about a year, when i brought my concerns to the psychiatrist.

Despite providing him with literature from scientists who study SSRI’s that supported that PSSD exists (literature he at first refused to read), he refused to acknowledge citalopram could have caused the ongoing sexual problems. I got a second opinion, but the second psychiatrist repeated in almost parrot fashion what the first one said, that he didn’t think citalopram could cause lasting sexual problems once you had stopped taking it.

I knew the citalopram was had caused my ongoing sexual problems, and after not being taken seriously twice, my hand was forced to start the complaints procedure hoping other people might see reason.

I was in for a shock at just how nasty health agencies and doctors can get when you have a strong argument and you keep pushing them for answers. These are some of the nasty tricks Avon Wiltshire Partnership used over the 6 year complaint to make me go away.

1 Answering my questions with answers not even relevant to the questions i was asking. Which my SEAP advocate had to repeatedly bring to their attention. This stalled the complaint process and wasted everyone’s time.

2 Repeatedly avoiding engaging with the post aspect regarding my sexual problems when i specifically asked them to, and instead referring to sexual problems while you are taking citalopram.

3 Repeated and often large delays in addressing my complaint (i had evidence that they didn’t meet guidelines for responding to my complaint in a timely manner, and which the PHSO ignored, and said that even if there were large delays, it would unlikely change their overall decision)

4 When my complaint eventually went to the PHSO a medical record appeared (which was sent to the PHSO) which was absent when i requested my medical records. In this medical record another doctor had said that i had complained of my sexual problems a short time before i had ever been prescribed citalopram. This was simply not true. I had no sexual problems whatsoever before taking citalopram. I remember my consulatation with that doctor, and i hadn’t mentioned any sexual problems when i had the consultation with him.

My SEAP advocate told me he has been on a number of cases where the NHS had altered and falsefied records when they were backed into a corner.

5 Claiming credit for things they did not do. Part of my complaint was that my concerns had not been listened to RE the sexual side effects that had persisted. AWP claimed that the psychiatrist had put me in touch with a pharmacist who specialized in psychiatric drugs. This was not true. This referral to the pharmacist was made by a Rethink support worker who i was seeing. I was able to prove AWP were lying about this, by getting the Rethink workers notes when she referred me. Even though i had evidence they had lied, which the PHSO couldn’t dispute, they said it was unlikely to change their overall decision.

AWP also claimed the psychiatrist had changed me from citalopram to fluvoxamine in response to my concerns about sexual side effects, as fluvoxamine is reported among SSRI’s to have a lower incidence of sexual side effects. This was not true. The suggestion for fluvoxamine was brought about by a psychologist who told me the SSRI’s fluvoxamine was supposed to be better at treating OCD than the other SSRI’s.

6 After becoming desperate after years of being told my sexual problems weren’t caused by citalopram, and knowing that they were, i made a suicide attempt. The police who were called out, had to beg the crisis team to speak to me (as the woman on the crisis team didn’t want to discuss the reason i was suicidal, because she was aware of my complaint). When she did eventually speak to me, she was extremely unsympathetic, claimed that if i had really wanted to kill myself i would have done, she said that citalopram couldn’t have caused my sexual problems as i hadn’t taken it for years. She then spoke to my mother and asked her if i had a history of violence ( which i hadn’t). She then told my mum that i was making my mums life difficult, and that my mum should have me arrested and banned from her house.

7 A doctor who i had never met or heard of sent a letter to the PHSO saying i was a drug addict and i had abused my benzodiazepines. This was simply not true, i took my medication as prescribed, and got physically addicted to benzodiazepines after taking them as prescribed over a number of years.

8 I was seeing a psychologist for my OCD, but a lot of the time i spent with her was taken up discussing my mental distress at the sexual problems that hadn’t gone away even after being off citalopram for a number of years. She became aware of my complaint and her attitude towards me changed, and she started telling me we needed to spend time working on how my complaint and behaviour was causing people to not want to help me within AWP. She also suggested my act of continuing to complain was part of my OCD illness. It wasn’t, i continued to complain because the problem hadn’t gone away, and no one was taking me seriously.

9 In one of these sessions with the psychologist, she mentioned that the psychiatrist had done nothing wrong, and again re iterated that we needed to look at how my attitude and behavior was in the wrong. This got me quite angry, as i knew this wasn’t true, and later in the session, after years of frustration at being not listened to i said in exasperation “i’m going to kill him”. It was clear to everyone involved that this wasn’t a serious threat and was said in a moment of exasperation. I even made it clear by the end of the session that i had no intention to try and kill the psychiatrist.

About a month or so later when a local resolution meeting was planned to try and discuss my complaint, AWP claimed in writing that i had made 3 other separate threats on the psychiatrists life, and that this was the reason they weren’t going to go ahead with the resolution meeting. This was simply not true, and apart from that one threat which i have always been open and honest about, i never made another threat against him. AWP claimed that when i made one of the threats i had phoned up a secretary at the mental health unit and threatened to kill the psychiatrist over the phone. Again this was simply not true. I swear on my life i didn’t do it

I asked AWP to provide some supporting evidence to back up their claims about these threats, but they couldn’t do so. When i asked the PHSO to look into it, they said the secretary involved was on extended leave and was unavailable for comment. How convenient.

These are only the main things AWP did to try and make me go away. I am currently abroad and don’t have access to all my notes, but there were some other things they did as well, which aren’t coming into my mind as i write this.

Throughout the whole complaints process i was going through benzodiazepine withdrawal, which made everything much harder, and at one point i had to ask for a break from the complaint because i was so sick. I had verbal confirmation from the PHSO that this wouldn’t affect my ability to have a review on their decision ( that AWP had done nothing wrong).

When it came to the time of the review the PHSO completely backtracked on what they had said, and used my delay (which came about because i was too sick going through benzodiazepine withdrawal) as the main reason to not have the review. What a double standard that i was penalized by the PHSO for my delay (which i had a legitimate reason for, unlike the delays by AWP). Also the PHSO didn’t penalise AWP in any way for their delays.

How ironic that the reason i couldn’t have my review ended up being because of the very behaviour from AWP that i had originally complained about, i.e being taken off benzodiazepines to quickly, and not in accordance with the BNF or NICE guidelines.

After 6 years the complaint came to absolutely nothing, AWP were cleared of any wrongdoing (despite strong evidence to suggest otherwise), and the PHSO stated in their final response that AWP had done nothing wrong.

What an utter insult to me, after all the suffering i went through from the PSSD, over rapid benzodiazepine withdrawal, and the drug interaction that made me sick. Also the frustration, and wasted time, and indignity and strong sense of injustice i was left with after seeing the complaint to the end, over a 6 year period.

The end conclusion regarding my ongoing sexual problems from the PHSO, was that my sexual problems were pre existing to me taking citalopram, and they had seen the medical record to prove it.

As i mentioned in an earlier comment i found the PHSO actually worse than AWP. But that’s another whole story completely.

They want to affix a label on many awakened souls, so that you are perceived as ‘crazy’, to the outside world. This is so the people don’t begin to question what they have been programmed to believe. CB

..“his personality changed after he began to take the drug — becoming irrational, lethargic and reclusive, and eventually suicidal. Their story echoed that of Heather and David Roberts, whose son Olly had Roaccutane prescribed aged 21. Within weeks, they said, “he changed from a cheery, outgoing person, enjoying company, full of ideas and enthusiasm, into a quiet, withdrawn, anxious, young man who began to find tears trickling down his face for no apparent reason”.

two bits of ‘evidence’ I found recently about PSGA – one aspect of post-psychotropic sexual dysfunction. Never gets mentioned in women but believe me, it exists. I’m interested to note that smoking relieved symptoms in the small case study – which makes me feel a bit better about my tobacco use. I’m pretty sure that smoking relieves many side effects of the antipsychotics in particular, and contributes significantly to the fact that almost everyone I met ‘in the system’ smoked like chimneys.

I think you’re probably right about the number of people ‘in the system’ ( your term!) who are smokers – and quite heavy smokers at that, but I’m not sure about this giving relief to antipsychotic side effects. Isn’t the number of smokers a reflection of an attempt at ‘self treatment’ since support from the mental health teams is so hard to access? As we all know, once you’re hooked on tobacco, like many other things, removing that need from your life is difficult – and probably more than an antipsychotic user can attempt in many circumstances. There again, smoking is said to be helpful for cases of colitis – so there lies the possibility of the same being true for antipsychotic side effects I suppose.

Thank you for the video, ‘The Benzodiazepine Medical Disaster.’
Finally, a video that validates what us sufferers have been shamefully experiencing without the support or acknowledgement from medical professionals, governments and health authorities.
Shane Kenny eloquently states the following:
‘We should not be interfering with the evolutionary process in the brain. We do so at our own peril.’
‘There is going to be a high price to pay for the harm and suffering a lot of people have been through.’
‘Those who voluntarily take illegal drugs get substantial medical resources from our societies.
Whilst victims of doctor induced illnesses, from prescribed drugs get little informed state help.
The legal pharma industry, can and has done, much good making drugs that save lives and alleviate illness.
But there is NO EXCUSE for scandalous neglect of this pandemic of life destroying pain or suffering benzodiazepines have caused and continue to cause, today.
There is NO EXCUSE for the ignorance or negligence of the medical profession who often wrongly prescribe them.
Government and Health authorities, have shamefully failed their societies pandering to Big Pharma because of their economic muscle.
Academic researchers too, must recognise they have a social responsibility to investigate this disaster.
It’s long past time that these actors faced up to the truth of the drugs and started doing something about it!’
I say let the floodgates open wide and let the dams get damaged beyond repair.
Personal injury lawyers, should fight for plaintiffs who have been severely harmed by these drugs.
If plaintiffs were given half a chance, perhaps they could make changes to doctors prescribing habits, increase penalty fines to drug companies not placing adequate warnings on the drugs and make medical practitioners pay hefty fines for not informing patients of severe adverse effects.
In order to improve the safety of these medicines, more legal medical claims should come forward so that the necessary changes can take place.
What happens if they don’t give you a chance to put one foot through the door?

I thought the “benzodiazepine medical disaster” documentary was particularly good at explaining how those given the role of protecting citizens and patients from the dangers of these drugs had failed so spectacularly.

If anyone wants to know who the older man in the documentary is, he is called Professor Malcolm Lader, and he is a member of the Institute of Psychiatry. He specialises in psychiatric drugs, and he has written over 100 papers on the subject of benzodiazepines.

He has also studied Pharmacology, Bio chemistry, Medicine, and Psychiatry, and he has formal qualifications in each of these disciplines. He is listed in the UK register as an expert witness, and has attended court on numerous occasions to give evidence on the effects of psychiatric drugs. He is also an adviser to the WHO (world health organisation) about the use of psychiatric drugs, and is a Professor of Clinical Psychopharmacology at King College London.

The older woman is called Professor Heather Ashton and she is a clinical Psychopharmacologist at Newcastle university. She has a first class honours degree in Physiology, and she qualified in Medicine in 1954, and then went on to gain a post graduate Doctor of Medicine in 1956.

She has worked at the University of Newcastle as a researcher and clinician, first in the department of Pharmacology, and latterly in the department of Psychiatry.

She has published approximately 250 pages in professional journals, books, and chapters in books on psychotropic drugs, of which over 50 concern benzodiazepines.

Both Professor Lader and Ashton are considered leading experts on benzodiazepines, and both did a lot of research into the effects of benzodiazepines from the late 1970’s and Professor Ashtons research continued into the early 1990’s.

It begs the question that if the leading experts on these drugs are saying they can be dangerous, and can cause all sorts of long term harm, why isn’t the rest of society listening?

I have just seen the ‘Benzodiazepine Medical Disaster’ and agree with you Carla in thanking Spruce very much for sharing this amazing film. It filled me with despair and horror and anger all rolled up together. Once again it’s Hoffman La Roche who are responsible. One comment by Dr Heather Ashton was very alarming indeed – that many doctors go to work for Pharma companies because the facilities are so good, but the Pharma companies are there to make money, not to worry about ethics, and so by working with them, these doctors sell their souls.

I had been sort of hoping that there was some decency somewhere in ROCHE, if we could just find it. I was interviewed by the media today about another ROCHE product, RoAccutane, and I was asked what kind of baseline outcome would I wish for, in the light of all the suicides on this drug. Apparently recently yet ANOTHER study has come out stressing that there is no proven link between this drug and suicide, and the deaths are due to the acne or some other problems in people’s lives.

I was thinking that if it’s remotely true that MHRA’s figures on suicides on this drug are 1 in 10,000, which actually seems very low, but ok, let’s assume they are right, then out of almost 50,000 prescriptions a year (and that does not include illicit unrecorded and unmonitored internet sales) then 5 people are expected to die as collateral. So, if it’s so few, why don’t ROCHE offer those families a serious financial means of immortalising their lost youngsters and helping others? Each family, if awarded a generous sum of money, could use it to set up some kind of memorial to the lost ones. Maybe a Centre for compassionate help and support, with a helpline, or a fund to offer a bursary to help with fees for students suffering having used the acne drug and left with side effects. These vehicles would always be trying to offer care for others made ill by the drug but who had no one to turn to, and often having lost everything, job, home, and worst of all, hope. Dr Ashton said it was no use expecting Big Pharma to fund research studies as it would be working against their own interests. It looks therefore from this film that Hoffman La Roche have no heart or decency at all, if she’s right, and my idea is therefore a hopelessly silly one. But I had thought that to be given such a memorial to our loved ones, if there really are so few of us bereaved by the drug, would save massive lawyers’ bills and long drawn out court cases, and would enable those of us driven by a desperate longing to do something to help to make a silver lining out of a tragedy. We will never change their ethos but at least we could do something to save others and indirectly they would be paying for it. My husband sees this as dirty money. I feel it might start like that but could be converted, by what good we do with it, to something really helpful, and above all, QUICKLY. Having seen Spruce’s film I just feel so desperate to help, but how? I am not prepared to spend years fighting in courts with lawyers when things need doing RIGHT NOW for sufferers. And one can’t expect to make a silk purse out of a ROCHE sow’s ear, but we could take their money and do it ourselves…..

I agree with you, wholeheartedly Heather.
When there has been a tragic loss or you have suffered and remain with debilitating symptoms, as a result of ingesting these meds, there should be ongoing support. A disability could be permanent and we don’t need to feel shunned from society because many deny the harm these meds induce.
I understand why you are upset after watching this video.
So, they have known about what these meds are inducing for such a long time, despite having all the research based evidence and still they hand them out like smarties. I am left speechless because if I had known this information I would of ditched these meds in a heartbeat!
I grieve with you and many others because it feels like we are not being heard.
Do we want the next generation to be hitting their heads against a brick wall?
Perhaps they will stand up and be counted and will do things differently than us however, I am hoping we can create the biggest dent that will create the necessary changes we have all been waiting for.
Positive changes can only take place when structural disempowerment within the corridors of power are eroded away. They got to start giving the people a voice so that the necessary changes can be made to our Laws. Many of us don’t have the energy or good health to fight but we do have a voice and stories to tell.
What don’t they understand?
Change begins when the fractured medical landscape hears our concerns and chips away at rigid laws that no longer serve.
How are we going to be heard or deal with questions that have been impacting many people for a number of decades?
The existing infrastructure should be challenged and should put many to shame for silencing or ignoring those who have been impacted by these meds.
We are in 2017 and if we are not listening to the people why are so many in a system that contributes to archaic ways that continue to erode basic human rights?
If society can support people who take recreation drugs voluntarily surely, they can establish an infrastructure that supports people who have been maimed from prescribed medicines?
Once seven years is over, you fall into the cracks and it seems no one wants to know you. I do have a problem with the Australian support network because unless you have a pocket full money or you are not adequately supported, you are on your own.
For people grieving there should be an outreach support service where you can be heard. Grieving can be a life time for some especially if one gets treated like an outcast of society.

I started out on this journey with prescription drugs back in 2006, at the age of 21. Back then I knew very little about prescription drugs, and saw doctors as authority figures to be respected and trusted, and I thought doctors would know best about these medicines, and that it would be very rare/ unlikely that a doctor would give a patient a medicine that would cause harm.

As the years have gone by I have not only lost nearly every shred of respect for the medical profession, but I have come to realise the extent of the damage prescription drugs can cause, and the almost blinkered attitude of the doctors, who put so much faith in the “evidence” supplied to them by the drug companies, and who are so reluctant to see the real evidence before their eyes, when their patients report problems with the medicines which weren’t picked up (or were covered up) in the drug companies 6 week trials.

Nearly every year I learn more and more about how these drugs maim and kill, and the extent people are prepared to cover it up, and allow their products to destroy lives, so they can get rich. It is almost like a stealthy holocaust being committed all around the world, with most people non the wiser, until something happens to them. Every year I seem to find out that the rabbit hole goes even deeper.

I remember being 21 before I took citalopram and developed PSSD. I was looking forward to the rest of my life and to the rest of my 20’s, all the adventures I would have, all the places I wanted to travel to, different jobs I wanted to do, girls I would meet, young love, maybe even starting a family with a girl I liked. The magic of youth. Life wasn’t perfect, but I felt alive, and there was so much to live for.

Then I developed PSSD, my penis went numb, and I couldn’t have any sexual feelings. All the joy seemed to drain out of life, and all the other exciting emotions seemed to vanish or were greatly lessened too. It was like life went on, but all the joy and fun of life had been snuffed out.

I never did get to enjoy my 20’s, or experience being a young man like I was supposed to. This has been permanently taken away from me. No amount of money can ever replace the ten years I lost, and the experiences I missed out on. I have to live with that for the rest of my life. If someone offered me a million pounds, or I could have those 10 years back, where I could be a normal young man, with my sex drive/ function normal, I would choose the ten years, every time. I feel like a part of my soul/ personality was chipped away when I developed PSSD.

Losing all sexual feelings, is on a par with a drug causing you to lose another sense like your sight or hearing, as far as I am concerned. If I took a drug and it caused me to go blind or deaf, the doctors might believe and listen to me a bit more. Why wont they believe that my sexuality has been wiped out, and that my genitals are numb. Why is it so hard to believe for them?

I am hoping change will eventually happen, and the truth about the damage these drugs do will eventually be accepted, and changes will be made accordingly. But it is happening way too slowly. You really don’t have to be Einstein to work out the harm these drugs cause either. How the MHRA and FDA can justify their stance on the safety of these medicines is beyond logic. They have very educated people in the field of medicine and science working for them. They must know. I can see no excuse for their inaction.

I can imagine me in my 80’s sitting in a nursing home, and a documentary coming on the television about the dangers of prescription drugs back in the early 2000’s etc, and how many people were killed, before the establishment eventually acknowledged these drugs were harmful, and changes were made. Like the television program “the hidden dangers of the Victorian home” where things we now know to be dangerous, like painting children’s toys with lead paint, were once regarded as safe by the majority, and the dangers were covered up until they became so obvious, that they couldn’t be denied anymore.

But it doesn’t need to take that long. If the people in power wanted to, the change could happen quite quickly. Its just that they choose not to.

Spruce, you have it so right when you say it seems as though the MHRA and FDA know full well what damage is being done but they choose to turn a blind eye. Trouble is, it’s gone way too far, it’s like the Sorceror’s Apprentice, the broom is sweeping them along and they’ve lost the power to stop it, so they’ve given in and allowed themselves to be swept along because it’s the easy option. And they all stand together, because they daren’t break ranks and do otherwise.

And most of their victims are so ill and broken by their poisonous medications that they can’t fight back, however much they’d like to. It is, like you said, a stealthy holocaust being committed all round the world. I was writing about the terrorist attacks in UK on the Olly Friendship Foundation facebook page, and saying, probably very insensitively, that if he really HAD to die, I’d far rather my son had been blown up, run over or quickly knifed by ISIS than endure the living hell he went through for 11 years on RoAccutane, Seroxat, Escilatopram and all the horrendous others. God only knows how he found the courage to face each day, when he got near the end. And the worst of it all was, NO ONE in the medical profession admitted it to him or us that it was the meds. They let him die, honestly believing his symptoms were his own fault, all brought on himself by his own lack of moral fibre.

Trouble is Spruce, I don’t know what the hell more we can do. The whole MHRA thing is stitched up pro Pharma. There just seems no way to save the world from this madness, this infliction of ruined lives on so many. It’s like we are shouting ‘wake up, wake up’ and they’ve covered their ears. When the Nazis were running the death camps, loads of people must have been well aware, but few tried to draw attention to it, no doubt for fear of what would in turn happen to them for so doing. Don’t you think we have a similar syndrome with Big Pharma, doctors and prescribed medications? They can’t let themselves come clean about what they REALLY know, because it would run into squillions of dosh and probably bankrupt the lot of them. So, cheaper and easier to bad mouth all of them as Joe Public, because the badly damaged ones are probably going to die in any case. Who cares?

Dear RXISK community,
I just wanted to bring this article to everyone’s attention.
I have hope that other class of medicines have not been tampered or flawed, in the past, just like this Valium that was bought to the authorities attention, just four hours ago.
I am also upset that no one helped or supported me when I rang alarm bells about the Valium my husband and I ingested.
No one cared.
No one listened.
No one bothered to investigate my concerns.
No one took any interest in how it has impacted our good health.
My Concerns:
How many other medicines have not been recalled and were flawed, contaminated or tampered with?
How many people have been maimed or died as a result of flawed, contaminated or tampered with medicines?

There needs to be an enquiry going back many decades, if this is the case for many other people.
Many mocked me when I tried to bring up serious issues concerning the Valium we ingested.
I am ashamed that not one living soul had granted me any justice surrounding my concerns.
I am ashamed that nothing had been done when I rang the alarm bells.
I am ashamed for some professionals singling me out for something that was totally out of my control.
I am ashamed that more lives could not be spared from dodgy medicines.

So what are we going to do about it?
How are consumers ever going to know if they are ingesting something flawed or tampered with?

We still have hope.
They can’t take this away from us!
We are never going to go away until CHANGES are made to benefit everyone.
RXISK has the power to make decisions that have impacted our lives.
We may be an oppressed minority however, with the unity and support from RXISK we do have the POWER to create CHANGES within the flawed infrastructure, this I know!
Our persistence and patience will pay off.
They are hearing us and this is a very positive outcome.
Do not underestimate the good will of the people because we are never going to go away.
The truth is coming to the fore and all we need is the necessary CHANGES so that people do not have to suffer, like we did.
Dear Heather and everyone who has suffered, I do have hope and faith that the medicine your son ingested and that of many other innocent people, will also be scrupulously investigated and will come under heavy scrutiny.
The floodgates are already starting to burst at the seams and there is nothing that anyone can do to STOP people from questioning our ‘so called robust’ systems. I am disappointed that no one took me seriously when I raised these concerns.
I guess it is better now than never.

Here is the article that is bringing shocking evidence about tampered with medicines.

It discusses how drug companies are now specifically targeting children with their drugs, and are even trying to suggest a way of screening children for mental health problems before they have developed mental health problems, with the aim to prescribe psychiatric drugs to children before they even develop mental health problems.

The documentary also explains how mental health charities who claim to be non biased, often receive funding from drug companies.

It also explains how drug companies fund education programmes where they indoctrinate GP’s in ways to increase diagnoses of psychiatric illness and to treat them with psychiatric drugs etc.

These drug companies are killing an estimated 42,000 people a year (quoted in the documentary), which includes children. If a serial killer was on the loose killing people, including children, there would be a huge public outcry, and society would put a lot of time and energy into catching and therefore stopping the killer.

Why should the drug companies be treated any differently, just because their method of killing is different i.e pills, instead of a weapon like a knife or gun etc. The outcome is just the same. And from what I have experienced, and I have heard from others, death by serial killer might even be less unpleasant, than the years of torment these drugs can cause.

Also 42,000 people a year is a lot more people than any serial killer has killed in his/her lifetime. The worst serial killer in the world was a man named Luis Garavito from Columbia who killed around 138-300 people between 1992 and 1999, i.e a seven year period. 300 divided by 7 is roughly 43 people a year. So drug companies kill a thousand times more people a year than the worst serial killer known in the history of mankind. That is really shocking.

Luis Garavito was originally given a prison sentence of 1,853 years, although this was later reduced. What prison sentence have the people who marketed these drugs, which kill a thousand times more people got? No prison sentence at all. Luis Garavito was heavily abused as a child, and although this is no excuse for his actions, it might go some way to explaining them. What excuses have the drug companies got? They know their drugs kill, but are so caught up in their greed, that they don’t care.

It just goes to show how white collar crime is often rewarded, rather than punished, whereas crime of a lesser extent committed by the poor and powerless, is severely punished. Although I completely agree that serial killers and non white collar crime needs to be stopped and punished, I am just pointing out the double standard.

As far as I am concerned the drug companies are doing nothing less than committing a stealthy type of holocaust, and it is happening throughout the world right now. How can this still be allowed to happen? Why hasn’t society tried to do more to stop it. It cannot continue like this. Enough is enough!

The $$$$ will never make up for the harm and suffering these meds induce.
I would rather have my good health than the millions.
You hit the nail on the head there, Spruce!
It is very sad how many of us have missed out on the ‘magic’ of life.
I am sorry you suffer without the acknowledgement.
When a professional can not see or diagnose a health malady, unfortunately it is instantly dismissed.
These medicines, once they impinge on your good health, impacts everyone.
It is like a permanent ‘bad tattoo’ that never goes away ~ and you are stuck with it for life!
You feel robbed of so many adventures and opportunities.
Can you imagine how the children who have grown with the trauma, must feel?
Not being able to enjoy every milestone of my child’s development, was heartbreaking for me.
Being in unbearable pain and not understanding why/where/when or how these meds eroded the life force within me, still makes me feel sad.
Some days, I wake up thinking I can conquer anything however, unfortunately, the reality is, I sometimes forget what my body can and can’t do.
It is like the cellular memory of the onslaught the med induced, has rendered me incapable of doing the things I use to enjoy doing.
Reality sets in and it reminds me that anyone can be a casualty of this ‘war within ‘catastrophe, that envelopes our very essence of who we are.
Limitations + suffering + lack of energy= relentless unhappiness and when I get inflammation of the meninges of my brain, especially on cold days, it can be quite debilitating.
We suffer in silence and we don’t go to talk to some professionals about our issues because some betrayed us and I have no idea how some who are in the caring profession, lack the compassion or empathy to understand why some patients have lost their trust and faith in western medicine ~ I get you, Spruce and other rxisk members who feel the same way.

Yet again, mass abuse of vulnerable people makes the headlines, where 13 ‘carers’ have been charged with ‘organised systemic abuse’ within two Devon care homes. However, in this case the management have been held accountable, rather than just the frontline staff.

And it seems that anti-psychotics were being prescribed to the residents, who had no ‘mental illness’. We’ve been here before, at Kendall House in Kent, and at Aston Hall in Derbyshire; where children were drugged by staff to facilitate sexual abuse.

So who were the psychiatrists/doctors/nurses who were prescribing these drugs in the Devon care homes? And will they be suitably punished for using powerful psychiatric drugs to facilitate abuse of vulnerable residents?

There must be some mileage to be gained here – on the back of this, anti-psychotics could be painted as the drug of choice to facilitate abuse. I’m with Peter Gotzsche on this – if these drugs can’t be used responsibly (which they clearly can’t), then no drugs at all for anyone.

So true, Spruce.
Big Pharma has their own laws and it seems they are untouchable.
Where is the justice, in all of this?
If we speak up about our experiences, many use a facetious tone to deal with the onslaught these meds induce.
Yes, Walter, no one should have a licence to prescribe these meds especially, if they are abused in the wrong hands.
It is quite sickening how these meds destroy so many lives. These meds should be put under the spotlight and until the Laws change, we will continue to witness the relentless evil it creates.
If these meds are so beneficial, there is also another side of the spectrum many are refusing to acknowledge.

Don’t drink or use drugs
Alcohol or drugs can blot out painful memories for a while, but they will stop you from coming to terms with what has happened. They can also cause depression and other health problems.

Antidepressants
You can become ill with depression following a trauma. Depression is different form normal sadness – it is worse as it affects your physical health and it goes on for longer. Depression can be treated with either antidepressant medication, or with talking treatments such as counselling or psychotherapy.

Using the London Terror Attack to promote ‘drugs’ seems like a cheap shot and doesn’t sit comfortably ..

Spruce, what a fantastic (but horrifying) film – ‘The Untold Story of Australian Psychiatry’ which I accessed following your link. You are so right about this new and stealthy form of holocaust. But OMG, what the hell are we going to do? Like you say, how DARE they go on doing this, drugging populations so they can’t fight back. It’s far far worse than a fanatical Hitler and his Nazis. These are intelligent people with absolutely no moral compass, just self delusion in the cause of following the money and patting themselves on the back in the process.
Walter is right, if these drugs can’t be used responsibly (which they clearly can’t) then no drugs at all for anyone. Let’s save the world folks….or are we too late?

Also, your research and way of writing is captivating, Spruce. When one considers what a difference Katinka Blackford Newman’s book has made to so many, don’t you think maybe you could put one together from your various posts on these sites? I think it would help to raise alarms and would be compulsive reading. Just an idea…..

Sexual abuse is defined as something unwanted done to you sexually by another person. Being chemically castrated, and not being able to feel your penis or have any sexual feelings for almost 10 years, i.e denied the ability to feel sexual pleasure, possibly ever again. I would say that fits the definition of having something done to you sexually by another person (psychiatrist) which is unwanted.

So as far as I am concerned PSSD is nothing less than government approved sexual abuse.

I also think PSSD fits closely to female genital mutilation, where girls and women have all or part of their clitoris removed. This often leaves them with a greatly reduced ability to experience sexual pleasure, it can cause anorgasmia, and sex can often be painful.

As far as I can see, PSSD does the same thing, just by a different method. The result is very similar. Female genital mutilation stops a woman being able to experience full sexual pleasure by cutting the nerves in the clitoris involved in sexual pleasure. PSSD it seems might do something very similar by disintegrating the nerve cells involved in sexual pleasure (as shown by animal studies).

Female genital mutilation is illegal in the UK (and many other countries), and you can get a 14 year prison sentence in the UK for carrying out female genital mutilation.

If female genital mutilation and PSSD in effect have the same outcome, if not by a slightly different method (as both cause damage to the nerves/ nerve cells responsible for sexual pleasure), why is one punished and taken seriously as a serious criminal offense, while PSSD which can cause just as much physical and psychological harm as female genital mutilation, is ignored and in effect accepted, as the FDA and MHRA know about PSSD, but choose not to act.

Female genital mutilation is accepted as a form of sexual abuse, a crime, and a violation of a persons human rights by most societies and governments worldwide. I can see no logical reason why PSSD should not get the same status.

Thanks Heather. I have often thought about writing about my experiences with psychiatric drugs and the mental health system. It had such a profound effect on my life, that it is hard to just forget about it. I still feel i have a lot to get off my chest.

You are right about how drug companies like to pat themselves on the back. If you go to the Lundbeck website (the company which made citalopram, which gave me PSSD), you will see on their website how they like to go on about how they make 13 billion a year, how great they are at treating mental health problems and brain disease, and how they are experts in this.

The website also describes how brain disease and mental illness is caused by chemical inbalances in the brain, and how mental illness and mood disorders are greatly undertreated, and how tragic this is, etc etc. They also like to advertise how they have set up in different countries all over the world. The whole tone is very self congratulatery.

Knowing what i now know, it makes me so angry how they manage to fool the un knowing into believing their lies.

For my part I’m almost glad Effexor wiped out my sex drive. After 25 years of celibacy I realize men won’t date someone labeled a “bipolar monster” by the high priests of psychiatry. Since I can’t have sex anyhow I’m better off not wanting any.

For some reason women aren’t as embarrassed about lacking desire as men are impotency. Still hurt when I was twenty and my parents told me no man would ever want me because I was “mentally ill.”

In response to you ‘Psyched Out’, and also to what Spruce has said about ‘chemical imbalances’, it’s so ridiculously obvious that one only slides into what might be termed mental illness, bi polar etc, because life’s events can be so utterly traumatic, and one reaches a point where the mind probably says, ‘just a minute, systems failure, exhaustion setting in, take a break, stop the world a minute and reach out for a parachute’, except of course that antidepressants etc are the main parachutes on offer, and these fly you to places that can be worse hell than what you were originally battling. No one is a ‘bi polar monster’ and everyone deserves love and happiness. My dear old dad was manic depressive, but it came from traumatic heart surgery followed by the traumatic death of his little son, followed by a lifelong trauma of how the heck he would manage, with his poor dodgy heart, to keep working and paying the mortgage. He had no insurance because no one would insure him, his heart was so dicky. I look back and see his annual manic times (invariably when we went on holiday – usually free working ones like hay making on a friend’s farm) as being his sudden mental escape into unreality. He’d buy things like a woodland he could start a business in, and get carried away with his escapist plans. We, my mum and I, tried to reason things out with him, usually to no avail till the episode had run it’s course. This was hellishly stressful for us and for him later, when he came back down to earth. But he was a wonderful, loving, hardworking and very clever man, and we loved him dearly. He had been made ill by life’s traumas, as are others just like him, and we all need to understand this and act on it. If there is chemical imbalance, it’s due to unacceptable pressure on an individual, causing their cortisol levels to surge, leading to anxiety, and depression maybe Is exhausted burn out, pure and simple. I’m no doctor, so what would I know, but I was a social worker for a short while (till The System frustrated me beyond words) and I observed my dad till he died from final heart failure at 72. I have SO much respect for him looking back on his life, and for my mum who never stopped loving him and caring for him. But as a family we encountered stigma from friends and relatives. She used to say, in his defence ‘this isn’t the REAL HIM’ because it wasn’t. It was stress engulfing him. This is my opinion anyway.